Professionally for the last few years, I’ve been thinking a lot about personalization. Prairie is looking to reinvent itself as a personalized learning system for students. I’ve started thinking more about this as a parent as well. I think just about everyone would want customized/personalized products whenever possible. As I’ve stated before, I’ve been thinking a lot about Koan’s future in the last few days. What I’m able to plan for him is largely based upon policy. Creating policy that allows for maximum personalization while maintaining safeguards is pretty tough. Having written my share of district policies, I have a first-hand understanding of this challenge. But, it can be done.
What I’m discovering as I learn to more about special education and policy for disabled people is that it needs to be highly flexible both in structure and implementation. People with disabilities are all unique. Even people with similar types of diagnosis have very disparate abilities and skillsets. Two people with Down Syndrome will have dramatically different needs. One can also make a pretty good argument for this type of thinking for people without disabilities as well. And, from a professional educational standpoint, I completely agree. That’s why I’m such a strong supporter of Prairie’s drive toward personalized learning. But, I would also argue there’s a significant and fundamental difference in the importance of flexible policy for disabled people. The impact of personalization for disabled people is essential. For the rest of is, it’s just highly desireable. For a blind person a screen reader is necessary to read electronic text. For a person with site, it’s just nice to have.
For those of who understand the education profession, I’m sure the idea of Individualized Education Plans (IEPs) for special ed kids comes to mind. This is an example of the system working to personalize. When implemented well, they do work to fulfill this function. But again, good writing and implementation are critical. And, there are still other policies that can constrain a well conceived IEP. Here’s an example of what I mean.
One of the changes that gets under my skin a bit is what happened in the last few years to “sheltered workshops”. These were programs that took in disabled people and gave them non-competative employment. These were jobs that are really low paying and are not very meaningful for people without disabilities — for example – sorting pencils in a box all facing the same direction. This is clearly not work for someone who could be competitively employed — a real indicator of successful living for disabled people. But, sheltered workshops were an awesome experience for people with more profound disabilities. For these people, the social aspect of getting out of their living arrangement and doing something else with new people was really significant. However, due to poor policy, poor implementation, or both — some higher functioning people were working in sheltered workshops. This was wrong and should not have happened. Advocates and policy makers became aware of this problem and sought to change it. In my opinion, these types of facilities were unnecessarily demonized in that process. And now, due to this advocacy as well as budget cuts, there are very few of sheltered workshops available. It would have been more sensible to focus on modifying policy and cleaning up implementation. One size does not fit all — a sheltered workshop might be very appropriate and positive for some people. From a personal perspective, a sheltered workshop would be great environment for Koan when he is an adult.
Last week, I was at the Special Education Advisory Panel for the Iowa Department of Education. We spent the afternoon listening to a pretty comprehensive update on the Iowa State Personnel Development Grant for Specially Designed Instruction. This is a mammoth project that includes comprehensive plans for improving education for people with disabilities from early childhood to postsecondary career readiness. The teams working on this grant are doing incredibly good things. Their work will have a truly positive impact on kids with disabilities across the State. But, I have to admit I was trouble by on piece of their work.
One of the facts I heard from the literacy team was pretty cool. If a person is able to be text literate at even a 1st grade level, their chance of competitive employment goes way, way up and the chance they are a victim of some type of abuse goes way, way down. So, it’s pretty clear this type of literacy should be a high-priority goal for disabled people. But, I worry about the kids like Koan who will almost certainly never reach that goal. How much will his experience in school suffer due to such a strong emphasis on reaching 1st grade literacy? Other, more functional goals are a lot more important. In this case, I think (and hope) the folks working on the “sever and profound” policies will ensure that Koan and kids like him are not left out in the cold in the rush to get all kids to be at least 1st grade literate. But, I do worry that this might be a similar situation to what happened with sheltered workshops.
My hope is that as new policy is rolled out, the people creating it and the people implementing it take some time to think holistically about what they are doing — look at the big picture. When dealing with populations with disabilities answers are rarely simple or straight-forward. Policy and the implementation should reflect this type of understanding.